Anybody diagnosed with microscopic colitis?

@drandolph1951 How much did you use and does it have to be Konsyl? Pills or powder? Just curious.

@rebe410 Psyllium Husk won't cure colitis but it can help manage symptoms. I have had very good results with taking about 5 g twice a day.

@ndough I'm sorry to hear that. I was placed on budesonide right away (over 10 years ago). It worked (stopping nighttime issues). Unfortunately, once I stopped it, it started up again worse. I would switch GI physicians. I switched GI MD's about 2 years ago; he has done more tests than anyone thought. His last one had me on it for 6 months and then did a biopsy, which proved it was still active. Based on that, it's called budesonide-resistant collagenous colitis. Now we are working on getting approval for Entyvio. I asked if I could just deal with it and watch my potassium. He basically told me, "No way in hell will I let you do that." My understanding is that doing this increases my risk of small bowel lymphoma. Do you live near Chicago? If so, my GI is in New Lenox. He studied under the top IBD physician at University of Chicago IBD/Celiac center

@ndough Same here. I had to rmtravel around Europe and Morocco with a daypack with change of clothes, wet wipes, underwear,etc. I have a toiletry bag in all our vehicles as well as emergency waste 'WAG' bags. It's embarrassing, humiliating and traumatizing when it happens in public, but I refuse to give up my life. I haven't done group outings but I try to stay connected with friends by hosting at my house or anywhere I can be near a bathroom.

@szelisk No, I’m from Chicago but now live in Texas. Most collagenous colitis is either Budesonide resistant from the start or becomes so. My last GI, told me If you have MC, it does not go away. I try to control mine through diet, sometimes it works. Night time is always the worst. Please be very careful because having it for a lengthy amount of time can cause cardiovascular disease, so get checked for that!

@ndough, I see a cardiologist because of my family history. Luckily, I don't seem to have the cardio issues my siblings or family do. My biggest problem is refractory Celiac, budesonide-resistant colitis, chronic gastritis, and pancreatic enzyme insufficiency. We are hoping this Entyvio will help. Budesonide is no longer an option for me, and neither is doing nothing. My diarrhea was so bad that my potassium levels are low, even with taking prescription potassium and magnesium and drinking 32 oz of pure coconut water a day (they went so low that I needed an IV).

@szelisk Bananas. GREEN bananas (green is for diarrhea, very ripe for constipation). Will really help with your potassium levels. There is absolutely no history of heart disease in my family. None. I have always been extremely active. Younger years a professional dancer. When that ended, weight training. Normal to underweight. Normal to low blood pressure. Cholesterol fine. I even went through a Nuclear Stress Test (ICK) with flying colors.
Two years ago I had to have Triple A bypass with double femoral bypass surgery. During surgery I had a heart attack. The only culprit that could be found (per my GI) was having MC for 35+ years. Cardiologist and Vascular surgeon kept insisting it was genetic. As I said…nowhere in my family history.

@debhammel

Thank you!
I would try just about anything to get this under control and stay there!

@rebe410 It won’t always keep it away, but can minimize the effects greatly at times. Should be part of your daily routine anyway, because with MC, you are definitely not getting the fiber your body needs.

@ndough

So true!
Thanks again! Hope you day goes wonderfully